I Have Been There

I never mentioned on this blog but I am now the co admin of a facebook support page called The Crohns and Ulcerative Colitis Diaries: Living with IBD which has really helped me to stay more up to date on the latest research that is out there and also feel a little more connected to other patients in the community. I wasn’t planning on writing a post today but I know there are a lot of people who are dealing with the emotional side of IBD right now.

Two years ago tonight at around 1 in the morning, I was ready to give up. After having three major surgeries just in 2011 alone, being in the hospital at least five times (and it was only September) and winding up with a permanent ileostomy in the blink of an eye after spending so many years fighting it, I just had enough. I had no idea what more could be done to help me with all of the emotional and physical pain I was experiencing.

I was a little less than two months out of my last surgery at this point. I was barely sleeping and whenever I would fall asleep, I would have terrible nightmares that would make me feel like I was right back in the hospital. I actually felt like I was reliving so much of what I was going through when I would rest which I think is part of the reason subconsciously my body didn’t want me to fall asleep. I was petrified of eating and winding up in the hospital again so I was down to about 85 pounds. My migraines were unbearable which definitely didn’t help me feel any better. I just felt awful – physically, emotionally, in every single solitary way… I could no longer handle life.

I didn’t know what else to do. I had a wonderful family who was always there for me. I had a psychiatrist in my life. But none of it was changing the way I was feeling. I was guilty all of the time because of what my illness did to my family and how much they had to sacrifice for me. I was exhausted yet so frustrated because I could never sleep. I was anxious every single second of the day. I never felt at peace with anything because at least a few times a day my mind would flash back to being in the recovery room or parts of some extremely terrifying hospitalizations. I was starving but couldn’t bring myself to eat like I should because in my mind it was “eat a normal amount and go to the ER OR get by on just a little bit” which was a no brainer. I was in agony with my migraines but because the amount of pain medication I required was so exuberant, there was little I could do with that.

I felt trapped. I felt lost. Here I was with resources at my disposal to help me but I had absolutely no idea how to utilize them. I had no clue how continuing to talk to my therapist would change my situation or help me in any way. I had no idea how telling my parents what they already knew was going to change anything since all of this was out of our control.

All I knew was that I could no longer continue living and feeling such intense emotional pain the way I had been. I could no longer keep reliving so much trauma. I couldn’t keep looking at my stomach, scars, and ostomy without cringing. I stopped recognizing the person starring back at me in the mirror, even though that reflection looked different weekly.

So, very late that September night, after sitting in my car crying in an effort not to bother my parents anymore than I already had that day/week, I knew that I wanted to live but not like this. I took a leap of faith and thought that there had to be something else, or someone else, with the ability to help me.

I took out my cell phone and dialed 911. This was the first time I felt a sense of relief from being in an ambulance. The medic attempted to take blood from my hand; the one place I knew he had absolutely no chance. But I didn’t care. I didn’t fight. I just let him do whatever he wanted. I actually asked the police officer if I was going to be in trouble since I was sitting in the car without my license, and then proceeded to make sure he knew that I had no intention of driving. He smiled and told me not to worry about it.

I have always been the kind of person who was a little on the “goody goody” side. I never wanted to get in trouble. I never wanted to do anything wrong. I want to please people and make my parents proud. I want to feel like I am good enough and having ulcerative colitis has really hindered that. I think it is one of the things that continues to cause me so much internal anxiety. Being diagnosed with IBD has forced me to go against a lot of the things I would have done given my core personality. It is a huge struggle. I like routine, UC makes planning impossible. I want to succeed and being sick definitely affected that. I need to make my parents proud and some of the actions I have taken just to survive have left me feeling like maybe I don’t.

I wanted to share a little bit about this night with you all today because I want everyone who reads this blog or who comes in contact with me online (or in person) to know that I HAVE BEEN THERE. I understand this kind of intense emotional pain, where you see no end in sight and have lost all hope. I have been there where I have hit rock bottom and actually called for help because I did want to live.

Living with inflammatory bowel disease is devastating in so many ways. It affects every fiber of your being. It cuts you down to your very core. At times I felt like it was forcing my soul to die. The once positive, sunny person I used to be who loved life and looked forward to things – I couldn’t find her after being knocked down so many times. This disease has the capability of breaking you.

But I am still here today. I am in a completely different place than I was two years ago. There is hope even when you look at your life and wonder how you will ever escape from the hole. I am proof of that. You just have to know that whatever happens, you are not alone. There has been at least one other person who has gone through what you have (and probably many more.) And somehow, someway, they have made it through. It may seem hopeless right now but that doesn’t mean it will be like that forever. Things do change.

About Marisa Lauren Troy

I am a 28 year old girl who was diagnosed with ulcerative colitis at the age of 13, and since had 14 major operations. I have been in and out of the hospital due to many complications, blockages, and usual UC symptoms.

Wow Marisa, years of mental and fysical pain came flooding back. I never felt the need to share my emotions and experiences with other sufforers but it’s nice to some of the time feel you’re not the only one. You write realy wonderful, that is a true gift. Best wishes. Lonneke Geukes, the Netherlands.

http://risaroo86.wordpress.com Marisa Lauren

Thank you so much for your words. I never could share either and there is a lot I still can’t say – so it is nice for me to read others work also. All the best to you my friend. xoxo

http://gravatar.com/spursmitgk Gloria Spurgeon-Smith

Thanks Marisa. The more information there is about what others go through, helps those who feel so alone in their illness. Count me among them. Some days I wake up sobbing. Yet, I do get up, check on my garden, feed the cats, make the coffee. Sometimes I write, read poetry, paint. Try to find joy. Finding you, and others, on Twitter and FB have added a dimension to my life I did not have.

http://risaroo86.wordpress.com Marisa Lauren

I feel like I have a whole new dimension to my life now also Gloria. It is wonderful to feel like you have a whole different kind of support system with people who truly understand every single thing you say without words a lot of the time. It is so important to find the joy in things..even small things some days. <3

http://bodhisattvaintraining.wordpress.com bodhisattvaintraining

I am sure, reading your inspirational words, that your parents are proud of you! One thing about living with IBD is that it can bring out such a caring for other people, so much help for others through your words…thank you.

http://risaroo86.wordpress.com Marisa Lauren

Thank you I do know they are proud of me, I just do feel like such a burden and know I have impeded on their life so much that it is hard to stop those thoughts from running through my mind. I do agree though in that IBD does make people really compassionate. So many of the people I come across with this disease want nothing more than to help others. It is so amazing!Thank you for all your support and kind words. They are SO appreciated!!

http://aguywithcrohns.com A Guy With Crohn’s

Marisa, I am so glad that you called for help that night. I can’t imagine not having you as an inspiration in my life. I hope you can start to put the pain behind you and let the happiness flow. I know great things are going on in your life now and I hope you can enjoy it all. You deserve great things in your life.

http://risaroo86.wordpress.com Marisa Lauren

I cant imagine not knowing you either!

Jodi

Maris-Thank you, thank you for sharing such a private,agonizing night of your life. You are so strong.Most people would not have had the courage to call 911 and ask for help. So glad you did. It breaks my heart to hear your story about that night and how desperate you were. It makes my heart soar,seeing you today. You have touched so many lives with your words and are an inspiration to so many, myself included. I continue to be amazed by you, your resiliency and your wisdom. I love you brave girl. Thank you for making me a better person and the world a much better place.

http://risaroo86.wordpress.com Marisa Lauren

<3 love you

Jodi

PS. funny that you posted that quote by Iyana Van zant. I used the same one on my walk web page. It is so true!! You have helped to heal so many by telling your story!

http://risaroo86.wordpress.com Marisa Lauren

I LOVE that quote!! One of my favorites by far.

http://colitisandnaturalremedies.com Kathy Young

Hi Marisa-
I just joined social media to also share my experience with ulcerative colitis. I silently suffered because I was too embarrassed to talk to anyone about it. I was pregnant with my second child when I developed ulcerative proctitis. I thought I had colon cancer because of the symptoms I was experiencing. You are embarrassed to talk about the symptoms, but too afraid to keep it to yourself. Yours is an inspiring story and one I can empathize with….before my colitis went into remission, I remember being afraid to put anything in my mouth because I knew what the end result would be. It’s a suffering only those with GI disorders can truly understand!
I was hesitant to develop a website and join social media to tell my story because of my own embarrassment of having the illness. But, I truly believe we are all here to make a difference in other’s lives and if my story could help others who suffer then I would be selfish not to share what I’ve learned.
I was desperate and looking for a way to get off of nine prescription meds per day. I was getting sicker, weaker, depressed, and concerned that my quality of life was forever changed. Divine intervention led me to an all natural Aloe Vera product that had me in remission in a month. Now I have never experienced the surgeries that you went through and know there are different levels to these illnesses. But, I feel that if I help just one person with my story then making the difference for that one person makes sharing worthwhile.
If you would ever be interested in learning more of how I put my ulcerative colitis in remission, please visit my website: http://colitisand naturalremedies.com. I want others to feel empowered to change their situation like I did. There are all natural ways to heal your body from these diseases without all the horrible side effects. Thanks for providing a place for others to share their experiences and learn from yours.